Little Warrior Makes a Wish -- Marenna's Pre-Trip Report

We talked to our social worker last October about Make-a-Wish. Right before Christmas we got a call from MAW, but we’re horrible about checking our callnotes for messages, so I didn’t call the rep back until after the holidays. We’ll be checking more often!

Anyway, the two Shannons, our MAW reps, came out at the start of January to meet with Marenna. A few days before, I asked her, “If you could have any wish in the whole world, what would it be?” She said, “To be a grownup!” Not in any sentimental, “I want to grow up someday” way. As in, RIGHT NOW, she wants to be a grownup! Gimme the car keys, Mom! When I explained that they don’t have that kind of power, ooooh, did she cut her eyes at me! Like, “Yeah, they will, you just won’t let them, Mom. You never let me do anything!”

Anyway, once she got past that, she said she wanted to go to Disneyworld. She’s the youngest of four, she’s heard all about Disneyworld, even though we’ve never gone! Plus, in the hospital, other kids talked about it. She especially wants to meet the princesses, no surprise.

Her story: normal birth, happy baby. Right after her first Christmas, when she was 6 months old, she started throwing up yellow bile. Took her in to her pediatrician, who said a stomach flu was going around.

10 days later, she was still vomiting and we noticed that her belly had a bit of a bulge. Well, my eldest, my son, had intussuception (bowel obstruction) when he was about that age, necessitating emergency surgery. Oh no, what if it was that? (We wryly laugh about that now … we wish it had been that!)

Went back to the pedi. She sent us for xrays. Before I even made it home, she called my cell. Said it looked like a tumor and to immediately go to the downtown children’s hospital. Don’t go home first. Well, we wouldn’t make it back home for about 2 ½ weeks.

That night, after xrays and a CT in the ER, they admitted us to the hospital for more tests. When the elevator opened, my husband felt like he had been punched in the gut. “Oncology Floor.”

A surgical biopsy confirmed that she had bilateral Wilms’ Tumor, Stage V. (It’s not worse than stage 4, that’s just what they call it when there are tumors on both kidneys.)

Started chemo. After 6 weeks, we were told the tumors weren’t shrinking, we needed to get the surgery scheduled. They wound up removing an orange-sized tumor from one kidney and a grapefruit-sized from the other. She went from being 17 lbs to 13 lbs. But we were so grateful … the surgeon was able to leave her with ½ of one kidney and 2/3 of the other. Way more than the minimum she needed.

More chemo, for a total of 6 months. Then we were off-treatment! (There were also cardiomyopathy issues in all this, but it resolved.) For solid tumors, they don’t use the term “remission,” they say “N.E.D. – No Evidence of Disease.” Renn was NED for 1 year, 9 months. After a routine scan last spring, her oncologist called me. It was back. A recurrence.

They removed the recurrence surgically, but there was a possible tumor spill, so she needed radiation. That was followed by 6 months of high-powered chemo. Every three weeks, we went in to the hospital to stay either 4 or 6 days for the wonderful/horrible stuff.

She’s been off-treatment since November. Her last scans were then, and they were NED . Her next scans are Feb. 17, then if all goes well, every 3 months.

Her hair is growing back now, eyelashes and eyebrows have rejoined us, and her energy is super. We joke that like the radioactive spider than bit Peter Parker, her radiation and chemo have given her superpowers.

I can't wait to find out when your dates will be. Our trip was absolutely magical- I love reliving it through others' trips. Your family is going to have such a wonderful time. GWTW is great at making the entire family feel like royalty!

She is adorable! I read through her cb site yesterday and was completly in awe of what you guys had to go through. Many things are similar with our daughter too. Cancer stinks! I can't wait to hear more!!

I will be following this story for sure. Have you picked your dates for Disney yet?

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We just made it wide-open! Originally, we said anytime except March thinking it would be slammed, but after a DISer gave me the "real" busy times, I emailed our MAW rep to "open up" the start of March as an option. But I have no idea ... March? May? Later?

I feel very lucky in that we don't think we're in any rush. But OTOH, Renn has scans in February and May and I can't help the fear of "but everything could change again." That's the thing with having gone through a recurrence. You can't let yourself feel safe again. It's like "fool me once, shame on you, fool me twice ..."